Thousands live with disfigured bodies, play waiting game for treatment

Thandi Fletcher, Postmedia News11.08.2012

Breast cancer survivor Michelle MacPhee at Rainbow Haven Beach, Nova Scotia. She was waiting for reconstructive breast surgery to help get her life back on track.Paul Darrow
/ For the Calgary Herald

Breast cancer survivor Michelle MacPhee walks along Rainbow Haven Beach, Nova Scotia, on Aug. 20, 2011. She was waiting for reconstructive breast surgery to help get her life back on track.Paul Darrow
/ For the Calgary Herald

When Michelle MacPhee gets ready for bed, she grabs her pyjamas and ducks into the bathroom to get undressed away from her partner.

“If he’s in the room, I’m a quick-change artist,” she said. “It’s, like, the fastest changeover you could ever imagine.”

The 42-year-old wasn’t always shy about her body.

It’s something that she says changed last year — after she was diagnosed with breast cancer and had her right breast removed.

The resident of Dartmouth, a Nova Scotia community across the harbour from Halifax, went under the knife in March 2011. She had her entire right breast removed, along with 25 lymph nodes in her armpit.

Her surgeon had told her that breast reconstruction would be possible within a year after the mastectomy, months of chemotherapy and radiation.

“In the back of your head, you make do,” she said. “It’s a year. It’s going to suck. But it’s just a year.”

But on the day of her mastectomy, in fact just before she went into surgery, a health-care worker told her the wait for reconstruction would be closer to two years. Later, another specialist told her four years was a more likely scenario.

“I said, ‘You need to stop talking to me right now. You have to leave this room,’” she recalled.

“Why would you tell me that going into surgery?”

In the hospital bed, MacPhee seethed with anger and tried to keep from crying as her partner tried to calm her down.

“How am I going to keep a smile and keep going?” she wondered.

“You feel stupid because it’s not your arm and it’s not your leg. It’s something you don’t need to get through your day. It’s not hindering my life.”

But the thought of waking up without a breast and living that way for four years was difficult to swallow on top of chemotherapy drugs and radiation treatment. Today, she has finally met with a plastic surgeon, but she has no idea how long she will wait for surgery.

“You’re just kind of floating around,” she said. “You don’t know if they have your name. You don’t know anything.

“It puts you in a limbo.”

FALLING THROUGH THE CRACKS

MacPhee is one of thousands of women across Canada living with disfigured bodies, waiting for months or years for a plastic surgeon to give them back what cancer stole away. They survived chemotherapy and radiation, but many say they now feel lost and forgotten as they join the seemingly endless queue for reconstructive surgery, floating in the unknown of what comes after breast cancer.

The problem is two-fold.

For breast cancer patients who undergo a mastectomy the option of reconstruction is available. Reconstruction can either be immediate, performed at the same time as a mastectomy, or delayed, performed in a separate operation later.

But many women have fallen through the cracks of an information gap in which they aren’t told about immediate reconstruction, even if they are eligible for it. Other women are aware of it, but their surgeons encourage them to delay it. The priority, they say, is to get the cancer out and think about the cosmetic aspect later.

Surgeons often don’t refer women to a plastic surgeon because they know patients won’t be able to get an appointment quickly. Immediate reconstruction requires general surgeons, who perform the mastectomy, and plastic surgeons, who do the reconstruction, to co-ordinate operating time, which can delay the mastectomy.

Preference is also often given to younger patients as some surgeons feel older women aren’t as concerned with their body image.

But once women have finished their cancer treatment, if they still haven’t been offered reconstruction, they usually never go on to ask about it. For those who do request it, once their breasts have been removed they no longer have active cancer and aren’t considered priority cases. At this point, they face multi-year wait lists.

In 2009, the American Society of Plastic Surgeons published statistics showing that nearly 70 per cent of U.S. women eligible for breast reconstruction are not informed of the options available to them. While there is no official data on how often women are informed about reconstruction in Canada, many plastic surgeons believe the numbers are similar here.

Dr. Toni Zhong, a plastic surgeon at Toronto’s University Health Network, said a major factor contributing to the information gap is misconceptions held by referring physicians about the procedure. She said a patient’s age is often key in the referral process.

Some physicians believe older women face a higher complication rate after reconstruction, or that they aren’t as concerned about how they look, she explained.

“As physicians, we all sort of hold certain preferences,” Zhong said. “I don’t know what it’s based on, but some physicians really feel that if you are a woman above a certain age, perhaps body image shouldn’t be as important to you.”

However, studies on surgery complication rates in older women are mixed, Zhong said, and “there is a huge difference between chronologic age and physiological age.”

Zhong said she has performed the DIEP flap, a complex, eight-hour microsurgical procedure on a healthy 76-year-old woman, yet has also refused to do the surgery on a 45-year-old woman who was obese, diabetic and a smoker.

Some surgeons also still believe reconstruction can hinder the ability to detect cancer recurrence, although the research is mixed on that, too, said Zhong.

“If your general surgeon is going to tell you, right or wrong, that having a reconstruction is going to decrease your chances of being able to detect recurrence or delay your chemo, of course it’s going to scare women,” she said. “They’re not going to pursue it.”

The discrepancy in attitudes from one physician to the next highlights the need for standardized protocol for determining which patients are candidates for immediate reconstruction, said Zhong.

“Because we don’t have guidelines, it’s up to individual interpretation,” she said. “Even if we can come up with some sort of consensus of who should at least be given a referral to see a plastic surgeon, I think that would at least address some of the issues. At least it’s making access more uniform.”

Until that happens, “you really end up having to advocate for yourself,” Zhong said.

'INFORMATION IS REALLY POORLY AVAILABLE'

While many women have mastectomies in Canada, Dr. Edward Buchel, a Winnipeg plastic surgeon, said “very few, the number is usually less than 10 per cent, go on to get immediate reconstruction or even delayed reconstruction.”

“People don’t even really know what’s going on, that they can have reconstruction two years later, five years later, 10 years later,” he said. “That information is really poorly available to patients.”

The low rate of reconstruction is especially frustrating, said Buchel, as there is rarely ever a need for a woman to live for any period of time without her breasts. Most women who require a mastectomy are candidates for immediate reconstruction and should be offered it, he said.

“If anybody in their right mind had a choice, they would have the cancer treated and their body part reconstructed,” he said. “You wouldn’t cut off a body part and wait a year. . . . You would go, ‘OK, make me as whole as possible.’ ”

Buchel said the ability to perform just a mastectomy is “not something to be proud of,” especially in a developed nation where the goal should be delivering exceptional quality-of-life care.

“Survival of cancer is expected,” he said. “We should be able to deal with cancer and not disfigure, maim, harm, hurt, cause pain or change anyone’s life to any great degree.”

Only 15 per cent of women with DCIS, a type of non-invasive breast cancer, who undergo mastectomies get immediate reconstruction, “although well over half of those patients would be eligible for immediate reconstruction,” she said. And only three per cent of invasive breast cancer cases get immediate reconstruction, she said.

“Isn’t that terrible?” she asked.

Dabbs said not all patients qualify for immediate reconstruction if they require radiation therapy. “But still, there’s more than three per cent of those women who would be eligible,” she said.

Many women aren’t aware the procedure is covered by their provincial health insurance, said Dabbs.

“It’s a misconception that they think they have to pay for it,” she said. “And I think a lot of times, surgeons don’t bring it up because they know they can’t offer plastic surgery in a timely fashion.”

Under-informing patients about their options is only half the problem.

LONG WAIT LISTS FOR OPERATIONS

Once women have mastectomies, they face incredibly long wait lists for reconstruction. Vancouver plastic surgeon Dr. Nancy Van Laeken says her patients wait at least one to two years for a consultation and another two to three years for surgery.

“Right now, I’m not even sure if I’m seeing any new patients,” she said. “I’m referring them elsewhere.”

Van Laeken has two days of operating time each week. Sometimes she is able to lobby hospital administration for more time, if there is an urgent need.

“It’s very difficult,” she said. “You’re in a difficult position, and I feel like I’m working as hard as I can.”

The number of mastectomy patients waiting for reconstruction surgery is so overwhelming that Vancouver plastic surgeon Dr. Peter Lennox said he was forced to stop accepting new cases. His practice is now focused primarily on immediate reconstruction at the time of the mastectomy.

“It got to the point that I thought it was not really ethical to take new patients when I had no idea when they would get an operation,” said Lennox, head of the Breast Reconstruction Program at UBC Hospital.

Plastic surgeon Dr. Sheina Macadam, who specializes in microsurgical breast reconstruction, was recruited to help take on Lennox’s patients in 2009. The two surgeons have more than 200 Vancouver women on their wait list, about one-third of all women waiting for delayed reconstruction in B.C., according to the province’s surgery wait times website. The list doesn’t include the women still waiting for their first consultation.

Although she also faces an overwhelming volume of patients, Macadam said she does still accept some new cases.

Many of her delayed reconstruction patients were not informed about the option of reconstruction before having a mastectomy, she said, and to deny them the opportunity of getting their breasts back would be unfair. Others live in areas where there is no plastic surgeon, she added, and the priority for their oncologist was to get the cancer out.

“I think they deserve a chance to get breast reconstruction, but at this point people are waiting a year for a consult, and one or two years to get into the OR,” Macadam said. “It’s a problem.”

The gravity of the problem is compounded by the fact that some provinces do not make wait times for delayed reconstruction public.

In 2007, a steering committee for the Canadian Society of Plastic Surgeons developed a list of recommended wait-time benchmarks based on a questionnaire sent to its members. The society reported plastic surgeons felt that delayed breast reconstruction patients should wait no more than nine months for their surgery, and immediate reconstruction patients should wait no more than one month.

Despite the recommendation, the Fraser Institute reported in its December 2011 report on Wait Times for Health Care in Canada that patients seeking plastic and reconstructive surgery wait the longest compared to all other elective procedures, more than 10 months.

LENGTHY WAIT LISTS FOUND ACROSS CANADA

Across Canada, plastic surgeons express the same frustrations.

In Edmonton, the problem is a lack of plastic surgeons performing reconstruction, said Dr. Blair Mehling. Of those who do, many are also expected to work several on-call shifts every week handling trauma cases in emergency rooms.

“It’s getting to the point where we just can’t be two places at once,” said Mehling. “We’re not even coming close to scratching the surface of demand (for breast reconstruction) up here. I mean, wait lists are insane.”

The delayed reconstruction patients are “the ones that really suffer,” he said.

Delayed patients, who wait a year to two years for a consultation and at least six months for surgery, get bumped down to make room for women who are offered immediate reconstruction, he added.

“It’s kind of unconscionable,” he said. “The poor ladies who wind up getting bumped again and again and again are the delayeds, because (they) can wait. And there comes a point when it’s just not reasonable how long these poor ladies are waiting.”

The surgeon shortages means the majority of Edmonton women who are told they need a mastectomy are never informed about immediate reconstruction.

“General surgeons don’t even bother offering it to patients who are interested simply because they know they’re not going to be able to get them in the operating room or find an available plastic surgeon,” he said.

By the time many of those women see him for a consultation months after their mastectomy, Mehling said they’ve done their own research and, in frustration, ask why they were never offered it.

Mehling said the question places plastic surgeons, who were never consulted at the time of their mastectomy, in a tough position. “How do you answer that question?” he asked. “You don’t want to go there.”

While initiatives are being launched to improve access to breast reconstruction, like the Breast Reconstruction Awareness day, or BRA day, which took place last October across Canada and has now spread to the United States, Mehling said raising awareness about the surgery could bring the unintended consequence of a bigger backlog.

That would put even more pressure on a limited number of resources that are already stretched to the limit, he said.

“If (plastic surgeons) can’t even accommodate the ones who do have awareness, my God, what are we going to do when that level of awareness goes up?” Mehling asked. “We haven’t seen that support from the government and health-care providers to address the bottleneck that we already have.”

In Calgary, plastic surgeon Dr. Christiaan Schrag said his delayed breast reconstruction patients wait about a year to see him for a consultation and another year for surgery. However, Schrag said his limited operating room access, just three days a month, “artificially increases” his wait times.

“I only want to see as many patients as I can treat within a year,” he explained. “Because I can’t get in (to the OR), I don’t see as many breast cancer patients as I potentially could if I had better access.”

The Canadian system differs dramatically from what’s happening south of the border.

Dr. Toni Zhong, who specializes in microsurgical breast reconstruction at Toronto’s University Health Network, completed a one-year microvascular and reconstructive surgery fellowship at Memorial Sloan-Kettering Cancer Center in New York City. Practising in Canada is a far cry from her experience there, she said.

“There are so many plastic surgeons there that it’s the opposite,” she said. “They are recruiting patients, they are actively going out to seek patients because there’s so much competition.”

In the U.S., wait times for patients with health insurance are virtually unheard of, said Dr. Sameer Patel, a plastic and reconstructive surgeon at the Fox Chase Cancer Center in Philadelphia.

“The waits are not horrendous,” he said. “Probably a couple of weeks.”

Upon hearing how long delayed reconstruction patients are waiting in Canada, Patel’s reaction was one of shock.

“Really? Wow, that long, huh?” he said. “Wow.”

GLARING DIFFERENCE BETWEEN CANADA, U.S.

Dr. Martin Jugenburg, another Toronto surgeon, also completed a fellowship at Memorial Sloan-Kettering in New York. The glaring difference between the two health-care systems stood out to him as well, he said.

In New York, Jugenburg said the more he operated, the more the hospital was able to bill and he was encouraged to take on more surgeries. In Canada, the more he operates, the more he consumes the hospital’s budget.

“In the States, I was an asset,” he said. “In Canada, I feel like I’m a liability.”

Jugenburg’s patients wait four to six months for surgery, a much shorter time than other plastic surgeons, especially considering he is allocated just 3.5 hours of OR time every week.

In Toronto, he said the limited OR time is due to a shortage of funding for breast reconstruction.

“People say there is a shortage of doctors, but there is a shortage of resources,” he said. “Hospital administrators are constantly crunching numbers trying to get things done.”

Part of the problem, said Vancouver’s Van Laeken, is a perception that breast reconstruction is a purely cosmetic surgery, akin to breast augmentation.

“It’s seen to be not as important as someone who has hip pain or knee pain and can’t go back to work or do the things they like to do,” she said. “This seems to be something that hasn’t had a high priority.”

However, studies show women who have breast reconstruction have a better psychological and emotional outcome. Reconstruction not only improves a patient’s body image, said Van Laeken, but also affects her relationships and even her desire to return to work.

“These are things that, unless you are talking to the patients and hearing it from them on a daily basis, you don’t think it’s important,” she said. “It has an economic and social impact that I think is measurable and is valuable, and should be considered in the resource allocation.”

Jan Collins of Calgary is an example of that psychological impact.

On a warm spring day, a glowing Collins is a picture of health as she strides into the Second Cup coffee shop after a yoga class at a nearby studio. But it wasn’t always that way. Collins, 55, was diagnosed with breast cancer at 46 and suffered a recurrence six years later. She had a mastectomy after her second diagnosis in early 2009, but only finished reconstruction last November.

“You feel kind of like a freak,” Collins said. “If I wore a V-neck T-shirt and then I went to yoga class and did a downward dog or something, other people might not have noticed, but I would notice.”

After her first cancer diagnosis, Collins was given the option of a lumpectomy or mastectomy with immediate reconstruction. Her chances of survival would be the same with both courses of treatment, she was told, so she chose the less-invasive lumpectomy.

But when the cancer came back and she underwent a mastectomy, she wasn’t given the option of reconstruction. Once she had her breasts removed, it took three years before she was finished with reconstruction, which was difficult on her emotional well-being.

“If you have to wait a year just to get in to talk to somebody, and then wait several months after that just for surgery, you’ve always got that anxiety,” she said. “It’s always in the back of your mind.”

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